ehlers danlos syndrome · Spiritual

Order UP! (At the Ehlers Danlos Cafe)

Photo by La Miko on Pexels.com

By: JANA GREENE

SERVER: “Welcome to the Ehlers Danlos Syndrome Cafe. My name is Susan and I’ll be taking care of you today. Have you been here before?”

ME: “Hi, Susan. Yes. I come here every single day. I’ll have the Low-Pain Day, with and some type of actual Energy as my side. Please leave off the Crushing Exhaustion and add a side of Gratitude.”

SERVER: “Well, that’s great you want to try the Gratitude! It’s my personal favorite. Hold up;.let me check with the kitchen. * Checks with kitchen. * “Sorry, we sold out of that a while back.”

ME: “Fine. Let’s see…I’ll take some Good Rest as an appetizer…”

SERVER: “We’re out…supply chain demands and whatnot.”

ME: “Right. Supply chain issues.”

SERVER: Let me tell you about our specials! We have plenty of Fresh Pain – just got it in! It comes topped with some Sauce of Fustration, over a bed of WTF NOT THIS AGAIN.”

ME: “Um, no thank you?”

SERVER: “Our Shoulder Sh*t Show entree is really a main event. It includes an ingredient so spicy, you’ll want to pull your arms completely out of the sockets and jump into an active volcano. Holy rotator cuff, Batman!”

ME: “Um, I kind of already do want to jump into an active volcano,…”

SERVER: “Or if you’d like the milder dish, order the T-Rex Special will make you function all day long with tiny little T-Rex arms because your elbows and wrists are hyperextending. Oh, and it’s served with a nice Thumb Dislocation Reduction.”

ME: “This restaurant sucks.”

SERVER: “We also have nice Gravel Knee Supreme as well, a slightly piquant exquisite pain with every step you take, and a knee joint that bends so far backward, you’ll look like the Rubber Band Man, and sounds like 1000 Hummers driving down a gravel road.”

ME: “Hard pass.”

SERVER: “Our last special is a SAMPLER! Shoulder, Knee, AND Hip Subluxations, so that whether you’re standing or sitting (or walking or laying down,) there is 100% guarantee, it ‘gon HURT like a MoFo.”.

ME: “Lick Rust.”

SERVER: “WHOA! No need to get snappy.”

ME: “Listen… all I really want to do is have a good day. I guess I’ll just take an order of Wasting the Whole Day in Bed Like the Granddad in Willie Wonka.”

SERVER: “Do you want guilt sprinkles?”

ME: “What??”

SERVER: “Do you want to feel guilty for not getting out of bed all day?”

ME: “No, not particularly.”

SERVER: “Guilt sprinkles it is! You also get two sides.”

ME: “Okay well then, for my first side, NO Barfing today. And don’t bring out the Slipped Ribs from throwing up. I don’t even want them on a separate plate. I’ve had it every day this week.”

SERVER: “We are outta ‘Not Barfing. Maybe tomorrow.”

ME: “Can I just order a Decent ATTITUDE, then?”

SERVER: “We don’t serve that here. You have to bring your own.…the attitude.”

ME: “Eat glass.”

SERVER: “just for being so sassy, how ‘bout a Blinding Migraine? It’s a 2-fer on sale this week.”

ME: “Kindly bugger off.”

SERVER: “We have a nice Vintage Dizzy Spell? You usually have at least one every day, and you can get it to go.”

ME: “Get bent. Can I cancel my order altogether?”

SERVER: “Oof I’m sorry, it’s already been put in at the kitchen.”

ME: “When did that happen? I just got here!”

SERVER: “Looks like … let me see….January 24, 1969.”

ME: “Doesn’t sound like you use very fresh ingredients…”

SERVER: “Yeah, we only use the stalest ingredients for maximum creakiness, immune function overreaction, and gourmet pain. We have the largest variety of pain sensations in all the world!”

ME: “How proud you must be.”

SERVER: “Will we be chasing our sorrows, er…um, I mean MEAL with a beverage today? Perhaps a margarita?”

ME: * blinks incredulously * “I’m an alcoholic in recovery, so no thanks.”

SERVER: “Wow, that’s unfortunate. A nice Chardonnay would probably ease the pain,”

ME: “Get thee behind me Satan”

SERVER: “It’s SUSAN.”

Me: “Whatever. Just bring me some medical cannabis and a Topo Chico, please.”

SERVER: “How about a nice anxiety spiral for dessert?’

ME: &%$#@! off. &%$#@! ALL the way off, ENTIRELY.

Spiritual

Reflecting on the Value of Friendship (on Christmas and Every Day)

By: JANA GREENE

This Christmas, I’m a lot of things: Wrung out, excited, frustrated, joyous, worried, sick, melancholy, and content – all at once. But one thing stands out more than any other this year – humbled and thankful for FRIENDSHIP.
So Merry Christmas, friends – old and new.
You enrich my life.
It may be true for some of us that we met in cyberspace, but every meeting of souls is a divine appointment. I’m so grateful for you.
If we know one another in person, thank you too for being a part of my life.
If I don’t see you very often or we have drifted apart, know if I loved you once, I love you always
For those struggling this holiday, I wish you peace that passes understanding.
For those of you mired in worry, I see you, and I feel your pain.
For those who are lonely, I’m love-bombing you in the Spiritual realm. And I’ll sit with you in the physical realm until you feel better.
To those who are so patient with my limitations, you make me feel unconditionally loved. Thank you for that.
To those grieving a loss this year, I’m grieving alongside you.
All this to say, I’m the MOST blessed lady to have EVERY one of you in my life and as sappy as it is, that’s the TRUTH.
Thank you for being a friend.

Spiritual

Time (a poem)

Let them make messes, Mama

By: JANA GREENE

When the world was younger
And so was I…
I was always so certain
I understood time.
My children had problems
That I could mend,..
Things I could fix,
Advice I could lend,
And now that they’re grown
(And somehow am I,)
The less I grasp
the reason why
The days were so long,
But the years flew on by.

Indeed, they did fly by.


❤️

humor · Spiritual

By: JANA GREENE

Today I’m writing a little lighter fare. This hilarious meme inspired me, because all my life I’ve longed to be a tan person.

I love the sun. I love being outdoors.

I think darker skin tones are the most beautiful.

I guess you could say (and please don’t take offense…) I’m “trans-tan,” in that I kind of “identify” as a tan person trapped in the body of a PASTY-ASS, LILLY WHITE, POTATO FAMINE-SURVIVING, PERSON FROM THE ISLAND OF CAUCUSES.

Not a drop of any nationality which might have rendered my melatonin anything but RICE got into my DNA.

When I got the 23 and Me results and saw that yep, I am officially 50 shades of mayonnaise, tbh it was was a little depressing. I am fascinated and enraptured by other cultures and places. Would have loved a little spice in my plain oatmeal.

But buying makeup is easy…give me the foundation shades “Walk towards the Light,” or “Antarctic Albino,” and I’ll be on my merry way.

Spiritual

Speak Up, Child

By: JANA GREENE

I speak up for myself now.
Well, sometimes.
As long as it doesn’t rock the boat TOO much.
As long as the person I have conflict with won’t stop loving me because I’m mad.
Only when I’ve rolled the issue OVER and OVER I’m my brain ad nauseam and have decided I’m with a safe person.
Only after I’ve played out the worst case scenario in my head, mini-grieved all possible outcomes.
At times, after I speak my peace, (because I’ve learned my peace has value, too,) I will fret and worry that I’ve upset someone.
Doesn’t matter if it concerns life events or little frustrations, I speak.
Even if it’s a whisper, I speak.
Even though I know assertion-guilt will try to make me feel like a bad human.
I’m starting – with fits and stops – to say when I’ve been hurt or bothered, even though I’ve been a people pleaser all my life.
So…
No,
You cannot talk to me like that. You may not treat me like that.
Little Me had no say, but I’m re-parenting her, you see. I’m protecting her. I care what she has to say. Her feelings, views, and passions have value.
I’m teaching her things that I (somehow managed) to teach my own daughters.
They speak up for themselves, without fear of abandonment, because they know they’re safe.
And Little Me is safe now too, finding her voice and using it. Progress, not perfection.

God bless us, every one.

Spiritual

When you feel like a “Lovey,” Remember you are Loved

By: JANA GREENE

When my second daughter was born, I wore a very lightweight sea foam green bathrobe at the hospital. I think I had bought it from Walmart. It had a soft lace around the edges, which were soothing for her to feel when she was nervous. It was inherently nothing special, but she glommed onto it, and it quickly became her security blanket. We called it “Lovey.”

She still has Lovey. She is 30 years old now, and throughout the years, Lovey is about the only thing that conveyed in all of her moves. I believe she still might sleep with it.

Much like the Velveteen Rabbit, Lovey became a shred of a thing. It had been snuggled, cried on, donned as a costume, barfed on, and worn as a turban, her whole life. It has shrunk from tumbles in the dryer. Like the Velveteen Rabbit of lore, Lovey became puny with wear, shredded by love.

As a chronic illness and pain patient, I feel a little like Lovey these days. I don’t feel identifiable as who I issued to be.

When I leave this world, I will leave it with my body in shreds. My hope is to be softer than when I came, ego shrunk from tumbles. My purpose only to love and be loved.

I feel shredded lately. My pain levels have been monumental. It’s almost more than I can bear, to be honest.

The trick is, I think, to realize that sickness is not the only thing shredding me. My joints – all 360 of them in the human body – are essentially being held together with silly putty instead of Gorilla Glue. My Earth Suit makes faulty collagen. Everything hurts, almost all the time.

When I feel leveled by the pain, I need to be mindful that illness isn’t my only leveler. I’m also being loved, and I know that. I’m very grateful.

All of us Loveys – tattered, worn, and threadbare – have to remember that we don’t lose our value as we experience the transition from being something the world recognizes and can easily determine the function of, to something whose purpose might not look as obvious.

See, my daughter’s lovey had only become more valuable to her. The fact that an old robe can find new life as something completely different is oddly comforting. It meant the difference between being an article of mom’s clothing, and becoming a beloved “friend.” It meant the difference between the Goodwill basket, and an honored place on her pillow.

So maybe I’m not breaking. Maybe I’m becoming. And in this season of great difficulty, I choose to believe the latter. I have to hold on to hope.

Puny from wear, shredded with love.

God bless us, every one.

chronic illness · Spiritual

EDS – When Pain is the Order of the Day

By: JANA GREENE

Hello, dear readers.

The past week has been a pain-fest. There have been times I’ve just laughed hysterically at the notion that I’m supposed to live day in and day out in this level of pain. Ha!! I mean REALLY??
So I write about it, because it’s the ONLY way I can deal with any of it. Thank God journaling is an outlet.
The truth is that I am slowly losing my mobility, and in awful pain while doing it.
This is life with Ehlers Danlos.
This morning, I subluxed my thumb out of joint, picking up a stack of papers. I bent down to clean litter boxes and the pain in my “good” knee brought me to tears. I waved at someone the other day and had to ice my freaking shoulder that night. It’s not just big movements that cause injury anymore. I can dislocate fingers opening a jar. I can’t hang laundry in the closet anymore because I have to reach too high to hang Bob’s shirts. Stairs are murder on my hips and knees. I AM ONLY 53 YEARS OLD.
I am really starting to feel by body slipping. I no longer have “a good knee” or “a good shoulder.” The mutated collagen holds my joints together is getting more lax. My skin is getting stretchier by the day because it doesn’t have proper collagen to hold it together. Falling asleep is excruciating because no matter how I lay, there’s pressure. Pain wakes me up from my sleep.
When my husband hugs me, I frequently ask him to hold me tighter so that it feels like my shoulders aren’t coming out of the sockets. I wake up and decide what I need to brace for the day – I have a “wall of braces” in my closet. I hadn’t had to use my cane since I lost the 40 lbs, but I’m having to use it again. One day I’ll need a wheelchair. Normally, I bitch about these things and move on, but it hasn’t subsided long enough for me to take a breather between flares lately. This of course this takes a toll on the whole family. Then guilt kicks in. Lather, rinse, repeat.
My Instagram and TikTok handles are “unbreakableJBG,” because I may be fragile, but this won’t break me. Oh hell no. I’m too damn stubborn. (But please pray for me, if you think of it.) ❤️

Spiritual

That “Chris Robinson” Spiritual Freedom

By: JANA GREENE

God, I love music.

And not just “love” it like I love chocolate, or cats, or 70-degree days.

No. I mean it “ministers” to my soul, man. And not in the holy-roller way; but in a way that satisfies me to the core. Maybe you feel the same?

A few months ago, my husband took me to see a concert by the Black Crowes. Watching the lead singer, Chris Robinson, create and enjoy his music on stage was mesmerizing. He didn’t exactly dance like no one was watching; his dance was more like an inviation to join him.

He flailed his arms; he stomped his feet. Shades of Woodstock, I tell you. He danced about because his body had to follow the direction of his heart. Can you imagine the Black Crowes performing while sitting in stillness? Of course not.

His fancy footwork was unchoreographed, but in the freest, most uninhibited way. That man couldn’t care less if thousands of people were watching, he just let go and let the music take over 100%. And you cannot convince me that God himself was present, chillin’, and appreciating the fine artform his kid Chris was sharing. (We are all his kids, you know.)

“I want to get to that level of unbotherdness,” I told my husband. “That’s true spirituality right there.”

And it was.

What seems like both yesterday and an eternity ago, I read Eric Clapton’s autobiography (aptly named “Clapton”) on a sunny beach in Aruba. I was on my honeymoon. It was 2007.

“I have always been resistant to doctrine, and any spirituality I had experienced thus far in my life had been much more abstract and not aligned with any recognized religion. For me, the most trustworthy vehicle for spirituality had always proven to be music.” Eric Clapton said.

Ah yes….MUSIC.

I’ve always felt this way about music, but it scared me. Getting heavy into a vibe felt like giving in to secularism, unless the song was churchy. “Churchy” music was fine to dance too. Heck, you could sprawl yourself out on the floor whilst fellow congregants got their groove on. Because it was FOR GOD. “The bigger the spectacle, the closer to God” was kind of the thinking.

I’ve fought it my whole life, good music trying to settle into the marrow of my bones. In my teen years, our youth pastor hosted a “Devil’s Music” night, and I wish I were kidding. We listened to Led Zepplin – whose music I was already having a torrid affair with – and then we listened to it BACKWARDS.

OH MY GOD HAVE I BEEN WORSHIPPING DARK FORCES, just by listening? This scared me into an exclusively Amy Grant and Petra phase, which I really tried to adhere to, but have you HEARD Al Green? Have you felt the pulse and lull of David Bowie’s voice?

The bottom line of the theology I lived by for years was: If it’s not worshiping God, it’s worshiping the devil. Which – in my current de/reconstructed faith, sounds absolutely ridiculous, but it’s what millions of people think is true.

Maybe all music is of God, because it was his big idea. Feel that bass in your heart? Chris Robinson does, and he isn’t afraid to BE the music.

But what if the music has a dark message? I promise you it’s not too dark for God to hear. We are ALL in a dark place many times throughout life. We record it and remember it because it too is part of the human experience. I personally have a Spotify list of “Crying Songs,” because sometimes my antidepressants make it difficult to cry and these songs really get me going.

Emotion is not the enemy. Things that evoke emotion are not innately bad.

For the majority of my life, I’ve tried to temper what I assumed was “worldly,” lest I offend God with my listening choices. “You are what you listen to,” I was taught.

And what I’ve been taught has run my whole life up until this point. Obsessed with what the church sanctioned, all while doubting the church’s reasoning but being afraid to give it voice.

But the subjectivity of music is like appreciation for any other art. Only God could take doh, re, mi, fa, so, la, ti, doh, and give us the liberty to arrange those simple sounds into millions of possibilities. And I have to believe that’s a holy process. Lots of things are part of a holy process. MOST things, I’d venture.

For God so loved the world, that he gave it music. And to make sure it properly,was executed properly, he gave us Chris Robinson, Van Morrison, Creed, Snoop Dogg, and Al Green.

And I’m grateful. I want to give myself over to music…become a spectacle not to impress others, but because the music is reaching a place in my soul that is so full, I have to get my body involved in what my heart is already enjoying.

God bless us, everyone. Crank up your tunes, and enjoy all the good gifts God has given!

Spiritual

Saying Goodbye to Jerry

By: JANA GREENE

I’m writing this through tears today.

Tomorrow I have to say goodbye to a man I called “Dad” for 20 years. His name was Jerry, and he was one of the best humans I’ve ever known. The world will be darker without him in it. I wasn’t expecting to lose him. I thought I had more time.

We always think we have more time.

We met when I’d first moved to the island in 1999. Everyone knew Jerry and I can’t quite remember exactly how we met. There are a few possibilities, but all I know for sure is that we knew eachother right away. Instant friends.

I cannot imagine never having met him.

Jerry looked like a wizened fisherman, a little rough around the edges but thoroughly handsome. He had piercing blue eyes and a white beard, and often played Santa to the kids on the island. He was a jovial Southern Gentleman, born and bred.

When I became a single mother under sudden and traumatic circumstances, Jerry stepped in.

My daughters were 9 and 12 when I went through my divorce. I wasn’t close to anyone on the island, save for one or two friends. But when I needed help, Jerry (and an incredible woman named Lynne) showed up.

They both taught me that the important thing in life is showing up.

I was so broken at the time. But I got to learn how to receive, and I stepped out in trust.

That’s how it was there, that community. I’d read about such geographical camaraderie but I’d never known it. It’s a real thing, it turns out.

When I had to work four jobs to support my children by myself. Jerry was there to give me an “Atta’ girl!”

When I was depressed, he would break out in a silly song.

Christmas was his favorite time of year. And it has become my favorite, too.

When I had no one to help me move into a tiny house I rented for me and the children, Jerry moved me. He and I moved every single thing ourselves. He stayed to help that day until I felt steady on my feet.

And then he took me to get a Christmas tree and set it up for us in our new place. My girls were so happy.

When I had a broken heart, he fathered me.

And when I met my husband, I couldn’t wait to introduce him to Jerry.

“Hi, Man,” he said to the man I would soon be engaged to. And then with a sly smile, “You know, if you hurt her, I”m gonna kick your ass!”

Oh Jerry.

And the truth is that I had never been parented like that. I’d never had someone have my back, no matter what. I’d never had anyone threaten mock-violence on my behalf. And it tickled me to no end. He and my husband would become fast friends.

“Jerry,” I said one day in the summer of 2007. “Will you give me away to Bob at my wedding?”

With a tear in his eye, he said he’d be honored. And he did.

And I was honored too. I told him after the wedding that he and his “bride” (he forever referred to her as such, even though they’d been together forever) that his marriage was EXACTLY the kind of marriage I wanted. They were best friends. They laughed together. They knew each other so well, they were one. I wanted that.

And after the wedding, life went on. My husband and I blended a family of three tween/ teen girls at the time. To say things got crazy is the biggest understatement. It was a brutally difficult season for us, but Jerry and I would send eachother funny memes, short messages, and always, always, “I love you.”

If Jerry knew you, he loved you.

And if Jerry loved you, you were blessed beyond measure.

Like my beloved friend Lynne, he put feet to his faith. He didn’t knock you over the head with a Bible, but you knew he loved God.

He said naughty words on occasion and told the occasional off-color joke, and we ALL loved him for it.

He himself had been though some stuff. So he understood going through stuff. And when you’re going through stuff, you need a Jerry.

The past few years, he and his bride did some traveling, and my husband and I welcomed a granddaughter. My little girls grew up and moved out (and back in. And back out….) My husband and I celebrated one anniversary after another, and I always got a little teary thinking about Jerry walking me down the aisle, so happy and proud.

Since his unexpected passing, the whole community is grieving.

Losing a Jerry is a tremendously big deal. They don’t make they like him anymore. He called himself an “old fart,” and we all laughed with him.

He gave the BEST hugs. He wasn’t in a hurry to let go, like he knew his hugs were like being plugged into a charger. And they were. I could be in the depths of despair, and he would lift me out somehow.

For many years, when we would see Jerry, he would part ways with a hug and an “I love you,” for me. And a hearty, “LOVE YOU, MAN!” to my husband

So Jerry,

You were a father when I needed one and a cherished friend always.

You didn’t preach what you wouldn’t practice.

You set the bar for loving people.

You set the example of a happy marriage.

You saw things in people they couldn’t see in themselves, and I thank you.

Rest in peace. On second thought, I’ll see you later, Dad.

Make new friends in your Heavenly community. Rejoice with them. Dance in the streets of gold. Crack them jokes to Jesus. Feast with the Father.

And please look after us, your friends and family who love you too the moon and back, and will miss you so much.

Love you, Man.

Love · Spiritual

16 Truths (and one Lie) About Marriage

By: Jana Greene

Now, listen.

I’ve been in a bad marriage, and I’ve been in a great marriage. My husband and I just celebrated our 15th wedding anniversary.

Here are some little things I’ve found to be true about my happy marriage, and things I have noticed about other happily-married couples:

(And note: It takes two to tango! You can’t float a healthy relationship all on your own.)

Having a kid won’t save a relationship.

Having ANOTHER kid also won’t save a relationship.

Spending a ton of money on a wedding doesn’t guarantee a happy marriage.

It’s oft-said, but don’t go to bed angry, if you can help it.

Just because the internet said it’s healthy, doesn’t mean it’s healthy for YOU two.

The ”silent treatment” makes things worse.

But giving someone asked-for space is respecting their boundaries.

This is important (and mondo challenging…) Sincerely WANT better for your partner than yourself. And vise versa. Consistently.

Hold hands even when you’re angry. Especially when you’re angry.

Conflict is natural and normal. Expect it.

Collect experiences as a couple, not stuff.

Keep NO secrets from each other.

You can’t tell a person “too often” that you love them. Slather that phrase on your partner generously. Go ahead and be sappy if it makes your little betrothed heart happy.

Doing fun stuff for the sake of doing fun stuff together is always a worthy endeavor.

LAUGH. Laugh together at the absolute absurdity of the world we live in. Laugh like your marriage depends on it, because at some points, it might. Humor – even gallows humor – is pretty bonding.

Let a power higher than yourselves guide you both. Listen to your gut and heart, which God uses to communicate with you. And trust it.

Oh, and the picture-perfect couples on social media whose relationships seem flawless? Yeah – that’s a lie. It’s PICTURE-perfect be cause it’s only perfect in the pictures. Lies, I tell you.

Blessed be!

Spiritual

A Disturbance in the Force

By: JANA GREENE

Don’t mind me. I’m just over here catastrophizing at 3 a.m.
What is even going ON?
Y’all feel it?
A major disturbance in the force.
It feels so icky, but I’m framing it this way, with intention. Even in my panic, I’m choosing to redirect my thinking – sometimes 1,000 times a day.
All these “labor pains” – those vestiges of chaos and seeming a doom – are getting stronger and closer together because they are drawing us nearer to the day we share the consciousness of God. One fine day, all that will be left as evidence of life on Earth will be LOVE.
So maybe we aren’t hurtling towards absolute destruction after all, but being led and taught how to love each other in preparation for the day on which love is all that’s left.
That’s my story and I’m sticking to it!